LynchUK Network launches – join the first meeting

5 October 2021

The LynchUK network holds its first working group meeting on the 23rd of November 2021, 1-5 pm. This is a free, virtual event for healthcare professionals. To register interest in participating please contact Dr Marnix Jansen (

Lynch syndrome is the commonest familial cancer syndrome, affecting 1 in 150 to 400 individuals. It is caused by a genetic fault and significantly increases the risk of bowel cancer (70% of those affected will develop the disease, in most cases before the age of 50) and endometrial cancer.

Personal and/or a family history of these cancers can be used to identify at-risk individuals, but the reliability of this is limited and so systematic testing of all cases has been introduced in the UK, as per NICE Diagnostics Guidance DG27 & DG42.

Analysing the impact of these changes on the service provided to patients requires a collaborative approach between endoscopists, surgeons, pathologists, clinical geneticists and allied healthcare professionals. However, in contrast to surrounding nations, the UK does not currently have a Lynch syndrome research working group wherein such issues can be critically evaluated for immediate patient or future research benefit.

The objective of this meeting is to arrive at a list of research priorities within this field. The group wish to drive collaboration between sites with a view to establishing a nation-wide patient registry and biobank.

They are aiming to bring together 40-60 researchers and healthcare professionals and representatives from the major professional organisations involved in Lynch syndrome, i.e. InSiGHT and UK CGG with an interest in Lynch syndrome patient care and research.

A draft meeting agenda is below.

  • 13:00 Welcome and Housekeeping
  • 13:00 Talk 1: > Registry
  • 13:20 Talk 2: > Clinical Trials
  • 13:40 Talk 3: > Biobanking
  • 14:00 Talk 4: > Clinical Genetics
  • 14:20 Dragon’s Den style event for junior researchers to win a small research prize.
  • 14: 50 Break
  • 15:00 Round table meeting

Break up group 1:  Registry

Break up group 2: Clinical Trials

Break up group 3:  Virtual Biobanking

  • 16:30 Summary each break up group and outlook
  • 17:00 Close

Meeting organisers:

  • Dr Marnix Jansen, CRUK Clinician Scientist UCL Cancer Institute and Histopathologist UCLH NHS Trust
  • Dr Ian Frayling, Genetic Pathologist to St Mark’s Hospital, Member of Council, International Society for Gastrointestinal hereditary Tumours (InSiGHT), Honorary Medical Advisor to Lynch Syndrome UK, and President, Association of Clinical Pathologists
  • Prof Mark Arends, Professor of Pathology and Head of Edinburgh Pathology
  • Prof Emma Crosbie, Professor of Gynaecological Oncology University of Manchester
  • Dr Kevin Monahan, Consultant Gastroenterologist and Endoscopist at the Lynch Syndrome Cancer Clinic Mark’s Hospital, Honorary Senior Clinical Lecturer, Imperial College London